I had HSCT with Dr Burt back in 2016 for pretty severe MS. I was accepted into the trial and managed the treatment fairly well and so far, knock on wood, haven’t seen any relapses or activity since then. I’ve been lucky to not to have to take any DMDs anymore either. My insurance (United healthcare) also paid for the majority of my treatment.
Thank you Dr Beaber for this explanation. I tried so hard when I was first diagnosed in 2013 to get in with Dr Burt. I didn't qualify based on his criteria and I wish I'd tried going out of country. I'm now considered progressive with an EDSS of 6.5. I have a family member recently diagnosed. Is this a protocol she should check into doing first?
Because the word cure has a definition problem in MS, since it can stay dormant for many years and then you suddenly have a relapse again. Were you cured in the meantime? What do you consider cured? No relapses, no MRI activity? It's difficult, so because they can't make a definition, they call the time with no MS activity "remission".
Glad you are doing well Joe. Out of curiosity, where did you get it done? Do you know what dose you received, and did you also receive ATG? Did you have any side effects.
@@DrBrandonBeaber thanks for the interest Dr! I think 200 mg/Kg. Cyclo only. I tried real hard to get into the American BEAT-MS trial but I was missing the requirement of active inflammation. So, I went to the international Mexican center Clinica Ruiz. Are you aware of them? As far as I'm aware, they and a Russian center are the only opt-in options for folks looking for HSCT, and they only do the lower-dose regimen - no BEAM.
@@DrBrandonBeaber Oh and side effects - apart from expected things such as hair loss, sickness after chemo and mild fever during neutropenia, no issues at all. I'm really glad I did it. Your video makes me wish maybe I'd had BEAM, but I understand it's also a little higher risk.
@@joegrange9963 Hi thanks for sharing, May I ask you how it's gone with the fatigue after the HSCT, and do you know if a decrease of it is expected ? Thank you very much.
Im very seriously hoping to fundraise for HSCT st Ruiz clinic in Mexico. Some believe ruiz has demonstrated success with that regiment. It may be the best decision ill have ever made, or the better part of 100k that would have been served better as family equity. Here in Toronto the Barlo clinic will only offer to facilitate ocrevus for me, a male PPMS 58. Although the ottawa hospital is performing HSCT i wont even get a referral from my neuro there with PPMS. I should have chosen RRMS instead.. Just kidding. I may likely have mexico or artemis in india as my only options. Positive testimonials about ocrevus for PPMS seem exceedingly rare . Im very happy in spite of this but given my percieved role as a parent is to help - not burden - my kids MAiD seems like it might be desirable down the road. Or if that is an administrative nightmare ill be my own hitman. When and if.. No drama intended.. life is and has been wonderful all 58 years so far, surely im lucky this happened after the kids are well on their own road. Logically and philisophically there should be no need to cling to this life of mine. We all are a blip in a continuum... anyhow
I had HSCT in December in NY. My regime was BEAM with ATG. It was quite the experience but I made it through! I did have a bout of optic neuritis in June but still hopeful for no further progression.
Hallo Dana, I was wondering did you actually have this done in New York? The reason I ask is because my mother went to Roswell Clinic for her cancer many moons ago. If that's the case I'm going to mention it to my own neurologist and see what he thinks. Thank you so much
I had HSCT in Mexico 2 months ago (non BEAM…myeloblative ). Would I have liked to been treated in Canada (BEAM protocol) absolutely….but like 99% of MS patients in Canada, the US and the UK we’re not eligible for HSCT in our own country.
My wife had HSCT done. Question? If it's the chemotherapy that wipes out Multiple Sclerosis / immune system ( which we all know ) why isn't offered here in the US and Canada? I know the answer but I want to hear it from you Dr.
Because if they would do the HSCT they even would not have enough MS patients, who need the doctors and medicines. Unbelievable. The USA outputs nearly 800 billions of Dollars EVERY YEAR for the US army and try not to help patients of ALS; MS,SMA or other diseases. Or China with 250 billions of Dollars every year. Imagine this 2 countrys would only spend 1% of these moneys to researches for this diseases, they would be much much much more succesful to treat the diseases like ALS, MS or SMA. Why a SMA medicine costs 2 million dollars? You can pay this?
This is offered in Canada, the US and UK but sadly by far the majority of MS patients are not eligible for treatment. In the US 2 sites offer this treatment but very, very expensive although some insurance carriers will cover..,but again they have very narrow guidelines on who is eligible even if your insurance will pay.
I ( rrms /diagnosed 2019 , 1,0 -1,5 EDDS , >10 läsions in brain, 2 in spinal cord , had 1st Tecfidera for 6 months, then new lesion in MRI --> since then Tysabri until now) will get hsct , either here in Germany , or in Moscow , both hosptals already confirmed that , i just have to look for the money. My healthinsurrence refuses to pay for it in first step, i contradicted , now i wait for the second answer. If they still refuse , i wll sue . If this even wouldn´t have success, i will pay it for myself. I´m realy more concerned about the MS course in the future, than the HSCT.
@@DrBrandonBeaber Thank you Dr. Beaber. Yes we have good coverage for Tysabri and as i know all the other MS Drugs here in germany. And all of them are paid by our healthinsurrence . My Neurologist in the "University Clinic Essen" ( The City is called "Essen") estimates the costs for HSCT, in the letter to my healthinsurrence, between 35.000 -45.000 € , if anything happens without complications and no need f.e. a visit in intensive care unit. The costs in moscow are 45.000 €.
@@Robin-me8fe hi. Do you really trust this clinic in Moscow? Im from russia and i would not trust our medicine. But its my opinion, may be this clinic is fine. Dont really know
@@yar2255 hi. Yes i absolutely do. I even believe they have the most experience with this treatment all over the world there, with over 2000 Patients. I even know und spoke with several people who got their treatment there and were really satisfied with everything. There even is a picture with all important " aHSCT " doctors from all over the world, like "the inventor of this treatment" Dr. Burt. And Dr. Fedorenko is one of them and on this picture, too. Look at the video here on the TH-cam Channel " HSCT Russia " , there you can geht impressions and see this picture :-)
There are studies done in the US by Dr. Richard Burt at Northwestern. He did HSCT on hundreds of patience over 20 years with extremely positive results.
I have a playlist with some other videos on HSCT in MS if you want to take a look: th-cam.com/video/jNgoxJTgQJc/w-d-xo.html The overview video entitled "stem cells" mentions Dr. Burt's research
Dr. Beaber, Any chance a KAiser Patient be able to get this treatment? I would sign up for it. I am a Kaiser MS patient in San Diego area. Your my specialist Doctor. Thank you for your response. Peter T.
Please can anyone tell me what does it mean? I can see that it's awesome article, but it was posted half a year ago. So what does it mean for us? Can i get this treatment without risk of death? If yes, then where? Sorry for my english. Thank you doctor. Greetings from Russia
Nothing is without the risk of death, even with meds for MS that have been around quite some time, you can get PML if you are positive JC-Virus. HSCT has a higher risk of death than other treatments, even though there were no cases of death in the past few years, if I understood this correctly. You can get the softer (but not as effective in the long run) treatment in Moscow for example, with Dr. Federenko. The BEAM treatment, which uses harsher chemotherapy drugs, but seems to be more effective in the long run) is only available in Western countries like the UK, US, Sweden, Italy etc. for now, I think.
I’m a RN who has worked with BMT/HSCT patients for 20 yrs. and Research for 15 yrs. And yes, I have MS. I think people need to hear more about the side effects of the chemotherapy used, and just what they are going to experience during this process, in order to fully understand what they are signing up for. It’s not pleasant to say the least and people do die from it. Back in the 90s, we were doing HSCT for breast cancer until years of data proved it was useless and resulted in more deaths. I believe we need a larger study that replicates these results before suggesting this may be the best therapy for MS.
Hi, I am an RN too, and have had MS for years. I blasted my way though 4 DMTs, the last one activated the JCVirus and I had a high risk for developing PML. The only analogy I can use is it felt like I was swimming in the ocean and saw some shark fins… the question became would one of the sharks bite me and would that bite prove fatal, because PML is usually fatal. What many people don’t realise is that if you develop PML and are lucky enough to survive it, the only DMT you can take is Copaxone, all of the others have the potential to activate JCV and cause PML. I failed miserably on Copaxone and suffered a High cervical spinal lesion affecting my breathing. So I had no real other options, and it was take my chances with PML, or my chances with HSCT. It became a case of being stuck between a rock (PML) and a hard place (HSCT). I chose HSCT, and underwent the procedure 2 years ago. It was a very challenging procedure, but I walked into it with my eyes open after doing thorough research under the direction of a Heamatologist who does this procedure here for bloody and bone marrow cancers. I am doing really well, and have been able to return to nursing part time, a BIG win. Choosing HSCT (or not) has to be a case of personal choice but after lots of research and medical direction. Whilst it is rare to die from MS related issues, I have had the complications of laryngospasm (thankfully it resolved the three times I had it very quickly, but it totally changed a pitch of my speech from the vocal cord spasms) and as mentioned have a huge c1, c2, c3, c4 lesion… and have had diaphragmatic breathing issues. I did not fancy my chances with the MS or the DMTs either. Anyway, hope you are well with your MS.
Excellent video Dr Brandon, I apologize for being a day late commenting but yesterday turned out 2B a very busy day. Thank you again sir and I'm sorry about the typos haha. Have a great day.
My MRI showed no new MS ACTIVITY so I was wondering how to sign up for trials or what I should do I have been medicine free starting September of 2018 and I love it and I live a basic stress free life I however have a black whole in the cerebellum that will more than likely will never get better but we will see I truly would like to help all but I don't know what to do next although I know I have to keep myself as healthy as possible I want to get better thank you and may God bless
I can't give you for advice here, but if you are looking for clinical trials, you can go to this website and type in "multiple sclerosis" and your region to see what options you have: www.clinicaltrials.gov/ The national MS society also allows you to search for clinical trials: www.nationalmssociety.org/Research/Participate-in-Research-Studies/Participate-in-Clinical-Trials
Basically people who improve the most have active lesions..it can stop progression in many people so if you do not have lesions you need to have it early edss 2-5 so you stay there...Seems like about 50% of ppms stop their progression..So with ppms you go right after diagnosis.
@@DrBrandonBeaber I really enjoy your weekly videos and insights. I was wondering whether you could do a video about BTK inhibitors that are in the P2/P3 trials. Maybe also a vid on ibudilast. There seems to be a lot more resources (thankfully) going into SPMS research nowadays. Thank you for all your work.
I watched the video- so you’re saying it does work? And if so which type of HSCT worked best? Sorry it was so fast for me and lots of data that I’m sure everyone else could follow. Could you “dumb it” down to a little summary? Thank You:)
That slide showing “other regimens” not achieving NEDA3 over 10 years goes against other famous studies. How does one reconcile this study with the ones showing a regimen of Cytoxan + ATG leading to 70%+ remaining NEDA3 after 10 years, such as the ones published by Burt, Federenko, and Ruiz?
What are your thoughts on the value of stopping increased rate of brain atrophy? While DMD reduces risk of relapse it doesn't affect atrophy associated with MS. Some small studies show HSCT does stop the increased rate of brain atrophy.
There are actually numerous studies showing that disease modifying therapies reduce brain atrophy. For instance, this article has data on lemtrada and MRI outcomes: www.ncbi.nlm.nih.gov/pmc/articles/PMC5075976/ Similar data on ocrevus: n.neurology.org/content/92/15_Supplement/P3.2-042
I'm very interested in any evidence supporting the claim that immune reconstruction therapies are able to stabilize brain atrophy. Hopefully your upcoming video on brain atrophy will touch on this.
is the info at 9mins (about disability progression years on )from new lesions, smoldering or previously done damage? or is it not specified? Gavin Giovannoni is looing at smouldering a lot these days i believe... U really are brilliant and a sage Brandon Beaber. ps use a mic sock (aka windscreen as ur mic pops whenever u say words with the 'P' sound..
Just had hsct in uk on cyclo and ATG i had no choice in the conditioning regime, but im feeling like I've been ripped off. I say that but the procedure was free
I hope everything goes well. Cyclophosphamide + ATG is a perfectly legitimate conditioning regimen, and many people have great results with lower risk than BEAM and Busulfan.
UR energy and hard work Brandon are a true inspiration. Wednesday's are a special day now. Not blowing smoke... but ya know , not all people of high intelligence use there gifts to benefit all. Thanks from me and on behalf of everybody
My Stem Cell Transplant was for progressive Systemic Scleroderma. The Transplant, 2/22/2011, stopped the progression of the disease. Dr. Richard K. Burt saved my life.
Dr. Beaber, thank you for so much hard work on this channel. In general, do you have any knowledge on biosimilar's of Rituximab for treating MS as compared to Rituxan, such as "Reditux"?
Dr. Beaber's reply isn't showing up here (though his others do.) Could you please copy and paste it for me? Very interested in his answer. Thank you in advance!
curious about the Mexican method which I'll recievein Sept 2023 which includes: Sulphamethoxazole / Trimethoprim Anti-Infective Prophylaxis • Itraconazole Anti-Fungal Prophylaxis • Cyclophosphamide • Dexamethasone • Pantoprazole • Ondansetron • Rituximab • Filgrastim • Acyclovir • MESNA... I'm sopposed to be a musician but I'm researching the above cocktail these days :/
I assume this is at Clinica Ruiz. I think cyclophosphamide/rituximab is a reasonable protocol and may reduce the risk of idiopathic thrombocytopenic purpura compared to cytoxan/ATG.
@@DrBrandonBeaber Yes, Dr. Beaber, correct - Clinica Ruiz! The ITP risk possibly being lower is fine, but needless to say, my biggest hope is a successful immune system reboot . Win or lose I’ll always have a good feeling having acted on HSCT giving the best odds - even with PPMS. I have a brother-in-law Ahmed Hassan, who was a famous percussionist who passed away over 10 years ago after decades of PPMS progression. His wife who is legendary in the modern dance field, Peggy Baker, talked about Ahmed shaving his head upon hopes of HSCT but in the end he was not considered for it. I am grateful for your all of your videos, including those on HSCT, and those with Dr. Richard Burt, and for your work as a top neurologist in reaching across ‘fiefdoms’. Wherever MS treatment is in 50 years you will surely have made roads to progress in the research and treatment of Auto - Immune, and as Dr. Burt spoke of - and I paraphrase humbly - a multi-disciplinary field of auto-immunology. Of course, I’ve had to weigh top level assessments On one hand: PPMS being less likely treatable with HSCT… ‘go BEAM or go home” On the other hand: Dr’s Ruiz, Dr. Fedorenko and others having spoken about their years of practice in detail, and also countless HSCT testimonials in several private FB groups chronicling their successes in detail on their years post HSCT, on the many months of recovery which includes dipping below baseline for a few months then recovering and often holding progression free (incl PPMS), and even well beyond pre-HSCT EDSS. I feel grateful, to you for the HSCT videos. I feel that you are, as a top neurologist, educating all (patient and professionals) towards important steps in the growing Auto-Immune Revolution.
When do you think this treatment would be approved by the FDA for use in MS? I'm 50/50 on whether it would be a good choice for me (50yo male active SPMS with worsening disability EDSS 6.5).
Yep any Dr can do this 'off label' in the US, and a very small number are. System-wide, likely this will only be available in the US after the BEAT-MS trial which is expected to have results in 2029 clinicaltrials.gov/ct2/show/NCT04047628 Assuming the trial goes well of course!
2029??? Here's the deal since this Dr won't say it. People are suffering and it's because BIG PHARMA. It's the best thing out there and they block it because of kickbacks from ALL major drug companies. This is a National outrage. Watch Living Proof the Documentary with Matt Embry on Amazon Prime. Thanks to Matt he opened our eyes. My wife is 17 months post HSCT and her bladder and bowel system is fantastic now. Just like everything in the US it's all about money and bad politicians and some Dr. Please watch and think outside the box my fellow MSERS! GOD BLESS
What an insightful analysis of the studies, Sir! Rewound the video at every few seconds so as not to miss any point. What I infer from the video, conditioning regimens less aggressive than BEAM + ATG are more suitable for persons with progressive MS considering the sensitivity of such people to cytotoxic agents and I assume that people with severe brain and spine atrophy would be even more sensitive. I am curious to know as to how a highly effective DMT like Lemtrada compare to NON-BEAM AHSCT as regards its cytotoxic effects on brain and spine health of people with Progressive MS, considering the similar efficacy outcomes in relapsing MS as seen from the TOPAZ study results. Would it be more gentle on brain and spine as compared to BEAM-AHSCT and yet equally effective in progressive MS? Kind regards.
It's hard to comment on what might work in progressive MS because there isn't great data on HSCT in people with progressive disease. Lemtrada specifically targets lymphocytes and is not cytotoxic to the CNS, so I think it would be safer than regimens like Cytoxan + ATG in this respect. Of course, Lemtrada has its own side effects.
If we would treat people early and agressive with for example IRT's, the majority probably won't even have to get HSCT and there disability won't get that high. So until we get are DMT protocol SH*T together a lot of people might be better off empty there savings to get HSCT. I have non active ppms for which the evidence of HSCT is lacking IMO, otherwise I would go for it.
@@ernietollar407 I wish you have all success. My sources are published research articles and that I approached 2 HSCT centres in Russia and Mexico. They did it for some patients. I managed to find 2 of them. They had some advantages but not what one may expect.
@@proudman6651 what did they say about hsct for lupus in Mexico and Russia? have you talked to anyone who knows about or experienced it? . I have PPMS but do actually know someone - a family friend in her 50's -with Lupus - i think Systemic Lupus Erythematosus (SLE).
@@ernietollar407 as far as I know they do it for Lupus in Mexico. Not sure if they still do it in Russia for it. Russian center gave me the ok for Behçet's disease then they said they stopped doing it. Try your luck if you want to but don't forget it isn't a cure .
@@lush462 I read her book, and she actually received novantrone (mitoxantrone) in the 2000s. Here is a summary of the Wahls Protocol which includes her MS history: th-cam.com/video/cmLdfkq4BpY/w-d-xo.html
@@DrBrandonBeaber thanks! Her book is incredible written but it is still an n=1 story. I wonder if HSCT could work for sjogren related small fiber neuropathy? In Russia and Mexico they apply HSCT also for CIDP etc.
I had HSCT in 2017 at Clinica Ruiz in Mexico along with 13 other people of various ages and different stages of MS. Excellent facility and program. I was 57 with SPMS/PPMS and EDSS of 4. It didn’t work for me. My EDSS is now 6, but it did work for a few others in my group. Mostly those who were younger. I tried to get into the US and Italian programs but I was denied because of my age and very limited availability. I heard that the Italian program was the most intense because they bring your white blood cell count to practically zero,
sorry you didn't have great results. Do you know which conditioning regimen you received? I believe at Clinica Ruiz they do cytoxan + ATG, but I believe they also use rituximab.
My wife had an extremely high disease burden with very aggressive disease. We went to Russia for an auto transplant. Conditioning regimen was cyclophosphamide 50mg/m2 x 4 days plus 500mg/ms rituxan. She is now 7 years post transplant and NEDA. Best thing we ever did. As an Oncology Certified Nurse I am confident it saved her life. Highly recommend it.
Hey doctor B I have a video suggestion or question? Do you have any views on B12 injections aiding remyelination or reducing the destruction to the myelin sheath? Thanks
I personally have patients do periodic testing for B12, but I don't necessarily think b12 injections are helpful unless B12 is actually low. Also, sublingual B12 works well too, so most people don't need injections.
I had HSCT with Dr Burt back in 2016 for pretty severe MS. I was accepted into the trial and managed the treatment fairly well and so far, knock on wood, haven’t seen any relapses or activity since then. I’ve been lucky to not to have to take any DMDs anymore either. My insurance (United healthcare) also paid for the majority of my treatment.
Glad it worked well for you JR :) Do you know what conditioning regimen you received? Cytoxan + ATG?
@@DrBrandonBeaber Thank you. Yes - Cytoxan and rATG.
@@jordancooper82how did you get your insurance to pay for it?
How is it going?
So happy to hear..thànks for posting! RRMS right?
Thank you Dr Beaber for this explanation. I tried so hard when I was first diagnosed in 2013 to get in with Dr Burt. I didn't qualify based on his criteria and I wish I'd tried going out of country. I'm now considered progressive with an EDSS of 6.5. I have a family member recently diagnosed. Is this a protocol she should check into doing first?
Why is MS in ' remission' , and cancer is cured when its gone for 5 years ?
Because the word cure has a definition problem in MS, since it can stay dormant for many years and then you suddenly have a relapse again. Were you cured in the meantime? What do you consider cured? No relapses, no MRI activity? It's difficult, so because they can't make a definition, they call the time with no MS activity "remission".
Thank you Dr! I had HSCT w/ cyclophosphamide only. Stable for 1.5 years now.
Glad you are doing well Joe. Out of curiosity, where did you get it done? Do you know what dose you received, and did you also receive ATG? Did you have any side effects.
@@DrBrandonBeaber thanks for the interest Dr! I think 200 mg/Kg. Cyclo only. I tried real hard to get into the American BEAT-MS trial but I was missing the requirement of active inflammation. So, I went to the international Mexican center Clinica Ruiz. Are you aware of them? As far as I'm aware, they and a Russian center are the only opt-in options for folks looking for HSCT, and they only do the lower-dose regimen - no BEAM.
@@DrBrandonBeaber Oh and side effects - apart from expected things such as hair loss, sickness after chemo and mild fever during neutropenia, no issues at all. I'm really glad I did it. Your video makes me wish maybe I'd had BEAM, but I understand it's also a little higher risk.
@@joegrange9963 Hi thanks for sharing,
May I ask you how it's gone with the fatigue after the HSCT, and do you know if a decrease of it is expected ?
Thank you very much.
Does anyone know where BEAM + ATG is done??
Israel
I’m sad I couldnt get BEAM. Hopefully cycl + ATG will do :)
Im very seriously hoping to fundraise for HSCT st Ruiz clinic in Mexico. Some believe ruiz has demonstrated success with that regiment. It may be the best decision ill have ever made, or the better part of 100k that would have been served better as family equity. Here in Toronto the Barlo clinic will only offer to facilitate ocrevus for me, a male PPMS 58. Although the ottawa hospital is performing HSCT i wont even get a referral from my neuro there with PPMS. I should have chosen RRMS instead.. Just kidding.
I may likely have mexico or artemis in india as my only options.
Positive testimonials about ocrevus for PPMS seem exceedingly rare . Im very happy in spite of this but given my percieved role as a parent is to help - not burden - my kids MAiD seems like it might be desirable down the road. Or if that is an administrative nightmare ill be my own hitman. When and if.. No drama intended.. life is and has been wonderful all 58 years so far, surely im lucky this happened after the kids are well on their own road. Logically and philisophically there should be no need to cling to this life of mine. We all are a blip in a continuum... anyhow
I had HSCT in December in NY. My regime was BEAM with ATG. It was quite the experience but I made it through!
I did have a bout of optic neuritis in June but still hopeful for no further progression.
Thanks for sharing Dana
Can you share some info on the doctor and program you used in NY?
@@quigonjin6030 Dr. Phillip McCarthy at Roswell Park Cancer Institute. I was able to get insurance approval.
@@quigonjin6030 I was referred to him by my neuro
Hallo Dana, I was wondering did you actually have this done in New York? The reason I ask is because my mother went to Roswell Clinic for her cancer many moons ago. If that's the case I'm going to mention it to my own neurologist and see what he thinks. Thank you so much
2 years old! Why not update your posts!? Have a nice day!
You may appreciate this HSCT playlist with 15 videos: th-cam.com/video/jNgoxJTgQJc/w-d-xo.html
I had HSCT in Mexico 2 months ago (non BEAM…myeloblative ). Would I have liked to been treated in Canada (BEAM protocol) absolutely….but like 99% of MS patients in Canada, the US and the UK we’re not eligible for HSCT in our own country.
Add Australia to the list.....th-cam.com/video/MwUgzuNQZWw/w-d-xo.html
What was the cost of the procedure in Mexico?
@@alexandramoise2339 around $55,000 in Mexico/Russia...$30,000 in India
My wife had HSCT done. Question? If it's the chemotherapy that wipes out Multiple Sclerosis / immune system ( which we all know ) why isn't offered here in the US and Canada? I know the answer but I want to hear it from you Dr.
Because if they would do the HSCT they even would not have enough MS patients, who need the doctors and medicines.
Unbelievable.
The USA outputs nearly 800 billions of Dollars EVERY YEAR for the US army and try not to help patients of ALS; MS,SMA or other diseases.
Or China with 250 billions of Dollars every year.
Imagine this 2 countrys would only spend 1% of these moneys to researches for this diseases, they would be much much much more succesful to treat the diseases like ALS, MS or SMA.
Why a SMA medicine costs 2 million dollars? You can pay this?
This is offered in Canada, the US and UK but sadly by far the majority of MS patients are not eligible for treatment. In the US 2 sites offer this treatment but very, very expensive although some insurance carriers will cover..,but again they have very narrow guidelines on who is eligible even if your insurance will pay.
Who is doing it in the US?
Because BIG PHARMA doesn't want it available. My wife had HSCT done in Mexico in 2019
I ( rrms /diagnosed 2019 , 1,0 -1,5 EDDS , >10 läsions in brain, 2 in spinal cord , had 1st Tecfidera for 6 months, then new lesion in MRI --> since then Tysabri until now) will get hsct , either here in Germany , or in Moscow , both hosptals already confirmed that , i just have to look for the money. My healthinsurrence refuses to pay for it in first step, i contradicted , now i wait for the second answer. If they still refuse , i wll sue . If this even wouldn´t have success, i will pay it for myself. I´m realy more concerned about the MS course in the future, than the HSCT.
Best of luck Robin. Do you get good coverage for Tysabri in Germany? Have you looked into the cost of aHSCT in Germany?
@@DrBrandonBeaber Thank you Dr. Beaber.
Yes we have good coverage for Tysabri and as i know all the other MS Drugs here in germany. And all of them are paid by our healthinsurrence .
My Neurologist in the "University Clinic Essen" ( The City is called "Essen") estimates the costs for HSCT, in the letter to my healthinsurrence, between 35.000 -45.000 € , if anything happens without complications and no need f.e. a visit in intensive care unit.
The costs in moscow are 45.000 €.
@@Robin-me8fe hi. Do you really trust this clinic in Moscow? Im from russia and i would not trust our medicine. But its my opinion, may be this clinic is fine. Dont really know
@@yar2255 hi. Yes i absolutely do. I even believe they have the most experience with this treatment all over the world there, with over 2000 Patients. I even know und spoke with several people who got their treatment there and were really satisfied with everything. There even is a picture with all important " aHSCT " doctors from all over the world, like "the inventor of this treatment" Dr. Burt. And Dr. Fedorenko is one of them and on this picture, too. Look at the video here on the TH-cam Channel " HSCT Russia " , there you can geht impressions and see this picture :-)
Do they do BEAM protocol in germany? Also what clinic it is? Im from the EU and looking for clinics
There are studies done in the US by Dr. Richard Burt at Northwestern. He did HSCT on hundreds of patience over 20 years with extremely positive results.
I have a playlist with some other videos on HSCT in MS if you want to take a look: th-cam.com/video/jNgoxJTgQJc/w-d-xo.html The overview video entitled "stem cells" mentions Dr. Burt's research
Dr. Beaber, Any chance a KAiser Patient be able to get this treatment? I would sign up for it. I am a Kaiser MS patient in San Diego area. Your my specialist Doctor.
Thank you for your response.
Peter T.
Please can anyone tell me what does it mean? I can see that it's awesome article, but it was posted half a year ago. So what does it mean for us? Can i get this treatment without risk of death? If yes, then where? Sorry for my english. Thank you doctor.
Greetings from Russia
Nothing is without the risk of death, even with meds for MS that have been around quite some time, you can get PML if you are positive JC-Virus. HSCT has a higher risk of death than other treatments, even though there were no cases of death in the past few years, if I understood this correctly. You can get the softer (but not as effective in the long run) treatment in Moscow for example, with Dr. Federenko. The BEAM treatment, which uses harsher chemotherapy drugs, but seems to be more effective in the long run) is only available in Western countries like the UK, US, Sweden, Italy etc. for now, I think.
I’m a RN who has worked with BMT/HSCT patients for 20 yrs. and Research for 15 yrs. And yes, I have MS. I think people need to hear more about the side effects of the chemotherapy used, and just what they are going to experience during this process, in order to fully understand what they are signing up for. It’s not pleasant to say the least and people do die from it. Back in the 90s, we were doing HSCT for breast cancer until years of data proved it was useless and resulted in more deaths. I believe we need a larger study that replicates these results before suggesting this may be the best therapy for MS.
Hi, I am an RN too, and have had MS for years. I blasted my way though 4 DMTs, the last one activated the JCVirus and I had a high risk for developing PML. The only analogy I can use is it felt like I was swimming in the ocean and saw some shark fins… the question became would one of the sharks bite me and would that bite prove fatal, because PML is usually fatal. What many people don’t realise is that if you develop PML and are lucky enough to survive it, the only DMT you can take is Copaxone, all of the others have the potential to activate JCV and cause PML. I failed miserably on Copaxone and suffered a High cervical spinal lesion affecting my breathing.
So I had no real other options, and it was take my chances with PML, or my chances with HSCT. It became a case of being stuck between a rock (PML) and a hard place (HSCT). I chose HSCT, and underwent the procedure 2 years ago. It was a very challenging procedure, but I walked into it with my eyes open after doing thorough research under the direction of a Heamatologist who does this procedure here for bloody and bone marrow cancers.
I am doing really well, and have been able to return to nursing part time, a BIG win. Choosing HSCT (or not) has to be a case of personal choice but after lots of research and medical direction. Whilst it is rare to die from MS related issues, I have had the complications of laryngospasm (thankfully it resolved the three times I had it very quickly, but it totally changed a pitch of my speech from the vocal cord spasms) and as mentioned have a huge c1, c2, c3, c4 lesion… and have had diaphragmatic breathing issues. I did not fancy my chances with the MS or the DMTs either. Anyway, hope you are well with your MS.
What type of hsct...in what city..?
@@amydascalos3964 I went to India, New Delhi, and had aHSCT (not the BEAM protocol, this was Cyclophosphomide and rATG)
thanks.. is it $30,000 there..was it done w/professional care there...?
@@Jesterjones9073 hi anne
do have kids after that ? because they say you wont have kids anymore after hsct ? is it true ? please answer
Excellent video Dr Brandon, I apologize for being a day late commenting but yesterday turned out 2B a very busy day. Thank you again sir and I'm sorry about the typos haha. Have a great day.
My MRI showed no new MS ACTIVITY so I was wondering how to sign up for trials or what I should do I have been medicine free starting September of 2018 and I love it and I live a basic stress free life I however have a black whole in the cerebellum that will more than likely will never get better but we will see I truly would like to help all but I don't know what to do next although I know I have to keep myself as healthy as possible I want to get better thank you and may God bless
I can't give you for advice here, but if you are looking for clinical trials, you can go to this website and type in "multiple sclerosis" and your region to see what options you have: www.clinicaltrials.gov/ The national MS society also allows you to search for clinical trials: www.nationalmssociety.org/Research/Participate-in-Research-Studies/Participate-in-Clinical-Trials
@@DrBrandonBeaber thank you for your time and help
With this treatment; do symptoms improve or just stops progression for some time?
Basically people who improve the most have active lesions..it can stop progression in many people so if you do not have lesions you need to have it early edss 2-5 so you stay there...Seems like about 50% of ppms stop their progression..So with ppms you go right after diagnosis.
@@DrBrandonBeaber I really enjoy your weekly videos and insights. I was wondering whether you could do a video about BTK inhibitors that are in the P2/P3 trials. Maybe also a vid on ibudilast. There seems to be a lot more resources (thankfully) going into SPMS research nowadays. Thank you for all your work.
I watched the video- so you’re saying it does work? And if so which type of HSCT worked best? Sorry it was so fast for me and lots of data that I’m sure everyone else could follow. Could you “dumb it” down to a little summary? Thank You:)
HSCT with the conditioning regimen BEAM (containing four chemotherapy drugs) was most effective in the study in the long run.
That slide showing “other regimens” not achieving NEDA3 over 10 years goes against other famous studies. How does one reconcile this study with the ones showing a regimen of Cytoxan + ATG leading to 70%+ remaining NEDA3 after 10 years, such as the ones published by Burt, Federenko, and Ruiz?
Here is the citation: www.neurology.org/doi/abs/10.1212/wnl.0000000000011461 They include sources they are drawing from.
What are your thoughts on the value of stopping increased rate of brain atrophy?
While DMD reduces risk of relapse it doesn't affect atrophy associated with MS. Some small studies show HSCT does stop the increased rate of brain atrophy.
There are actually numerous studies showing that disease modifying therapies reduce brain atrophy. For instance, this article has data on lemtrada and MRI outcomes: www.ncbi.nlm.nih.gov/pmc/articles/PMC5075976/ Similar data on ocrevus: n.neurology.org/content/92/15_Supplement/P3.2-042
@@DrBrandonBeaber
wow, thank you so much!
Nice video HSCT looks promising.
Did I hear correctly that HSCT doesn't work for PPMS?
Still Dr.Burt old ways more truly chemotherapy no thanks
At 08:56 I think there is a mistake. You mentioned 71.3% progressed while in fact 71.3% remained progression free at 10 years. am I wrong?
hi doctor ... i have been using tysabri for 10 years but i stopped because jc virus is positive .. can i still go for HSCT ?
I'm very interested in any evidence supporting the claim that immune reconstruction therapies are able to stabilize brain atrophy. Hopefully your upcoming video on brain atrophy will touch on this.
is the info at 9mins (about disability progression years on )from new lesions, smoldering or previously done damage?
or is it not specified?
Gavin Giovannoni is looing at smouldering a lot these days i believe...
U really are brilliant and a sage Brandon Beaber.
ps use a mic sock (aka windscreen as ur mic pops whenever u say words with the 'P' sound..
Just had hsct in uk on cyclo and ATG i had no choice in the conditioning regime, but im feeling like I've been ripped off. I say that but the procedure was free
I hope everything goes well. Cyclophosphamide + ATG is a perfectly legitimate conditioning regimen, and many people have great results with lower risk than BEAM and Busulfan.
You're complaining about a free treatment most would kill for. Wow
Anyone here knows anyone who got this treatment for Behçet's disease?
UR energy and hard work Brandon are a true inspiration. Wednesday's are a special day now. Not blowing smoke... but ya know , not all people of high intelligence use there gifts to benefit all. Thanks from me and on behalf of everybody
My Stem Cell Transplant was for progressive Systemic Scleroderma. The Transplant, 2/22/2011, stopped the progression of the disease. Dr. Richard K. Burt saved my life.
The section in his book about scleroderma is very interesting.
Exciting 🤔
Dr. Beaber, thank you for so much hard work on this channel. In general, do you have any knowledge on biosimilar's of Rituximab for treating MS as compared to Rituxan, such as "Reditux"?
I don't have experience with reditux. I have experience with truxima which appears to be identical.
@@DrBrandonBeaber Great! Thank you!
Dr. Beaber's reply isn't showing up here (though his others do.) Could you please copy and paste it for me? Very interested in his answer. Thank you in advance!
@@writetotracy123 I don't have experience with reditux. I have experience with truxima which appears to be identical.
damn i wish you spoke english
Could someone get the HSCT done twice if, say, 10 years later progression increases?
yes.. people have done it twice if disease resumes.
No new posts I am going for this procedure and would have liked a more recent post this one was very informative. Thank you
Glad it helped and good luck.
If someone goes bad again after years of hsct, would a second hsct be possible?
I suppose, but I'm not sure how often this is actually done.
@@DrBrandonBeaber interesting, thats the best "cure" we have now then
Does anyone know where BEAM protocol can be done?
Probably most centers doing aHSCT would do it, but I don't believe Dr. Burt at Northwestern in the US typically used BEAM.
@@DrBrandonBeaber even the ones from Mexico, Russia, India? (As that ones are the more affordable and easier to get acepted for people outside US)
curious about the Mexican method which I'll recievein Sept 2023 which includes:
Sulphamethoxazole / Trimethoprim Anti-Infective Prophylaxis
• Itraconazole Anti-Fungal Prophylaxis
• Cyclophosphamide • Dexamethasone
• Pantoprazole
• Ondansetron
• Rituximab • Filgrastim • Acyclovir • MESNA... I'm sopposed to be a musician but I'm researching the above cocktail these days :/
I assume this is at Clinica Ruiz. I think cyclophosphamide/rituximab is a reasonable protocol and may reduce the risk of idiopathic thrombocytopenic purpura compared to cytoxan/ATG.
@@DrBrandonBeaber Yes, Dr. Beaber, correct - Clinica Ruiz! The ITP risk possibly being lower is fine, but
needless to say, my biggest hope is a successful immune system reboot .
Win or lose I’ll always have a good feeling having acted on HSCT giving the best odds - even with PPMS.
I have a brother-in-law Ahmed Hassan, who was a famous percussionist who passed away over 10 years ago after decades of PPMS progression. His wife who is legendary in the modern dance field, Peggy Baker, talked about Ahmed shaving his head upon hopes of HSCT but in the end he was not considered for it.
I am grateful for your all of your videos, including those on HSCT, and those with Dr. Richard Burt, and for your work as a top neurologist in reaching across ‘fiefdoms’. Wherever MS treatment is in 50 years you will surely have made roads to progress in the research and treatment of Auto - Immune, and as Dr. Burt spoke of - and I paraphrase humbly - a multi-disciplinary field of auto-immunology.
Of course, I’ve had to weigh top level assessments
On one hand:
PPMS being less likely treatable with HSCT… ‘go BEAM or go home”
On the other hand:
Dr’s Ruiz, Dr. Fedorenko and others having spoken about their years of practice in detail, and also countless HSCT testimonials in several private FB groups chronicling their successes in detail on their years post HSCT, on the many months of recovery which includes dipping below baseline for a few months then recovering and often holding progression free (incl PPMS), and even well beyond pre-HSCT EDSS.
I feel grateful, to you for the HSCT videos. I feel that you are, as a top neurologist, educating all (patient and professionals) towards important steps in the growing Auto-Immune Revolution.
I assume that when you say "people w/progressive MS" regarding this trial it means people with SPMS and PPMS?
Yes Andrew
Lol the thumbnail of this vid. It's like a victory pose! Your best one yet! Hahaha
Thanks Spencer
هل تمكنتم على وجود علاج لهذا البلاء MS
When do you think this treatment would be approved by the FDA for use in MS? I'm 50/50 on whether it would be a good choice for me (50yo male active SPMS with worsening disability EDSS 6.5).
I'm from Belgium not the US but approved? Isn't it already approved for blood cancers? They just don't do it because they want to sell their DMDs
All of the commonly approved drugs used for aHSCT are FDA approved.
Yep any Dr can do this 'off label' in the US, and a very small number are. System-wide, likely this will only be available in the US after the BEAT-MS trial which is expected to have results in 2029 clinicaltrials.gov/ct2/show/NCT04047628 Assuming the trial goes well of course!
@@DrBrandonBeaber I doubt the VA will.
2029???
Here's the deal since this Dr won't say it. People are suffering and it's because BIG PHARMA. It's the best thing out there and they block it because of kickbacks from ALL major drug companies. This is a National outrage. Watch Living Proof the Documentary with Matt Embry on Amazon Prime. Thanks to Matt he opened our eyes. My wife is 17 months post HSCT and her bladder and bowel system is fantastic now. Just like everything in the US it's all about money and bad politicians and some Dr. Please watch and think outside the box my fellow MSERS! GOD BLESS
What an insightful analysis of the studies, Sir! Rewound the video at every few seconds so as not to miss any point. What I infer from the video, conditioning regimens less aggressive than BEAM + ATG are more suitable for persons with progressive MS considering the sensitivity of such people to cytotoxic agents and I assume that people with severe brain and spine atrophy would be even more sensitive. I am curious to know as to how a highly effective DMT like Lemtrada compare to NON-BEAM AHSCT as regards its cytotoxic effects on brain and spine health of people with Progressive MS, considering the similar efficacy outcomes in relapsing MS as seen from the TOPAZ study results. Would it be more gentle on brain and spine as compared to BEAM-AHSCT and yet equally effective in progressive MS?
Kind regards.
It's hard to comment on what might work in progressive MS because there isn't great data on HSCT in people with progressive disease. Lemtrada specifically targets lymphocytes and is not cytotoxic to the CNS, so I think it would be safer than regimens like Cytoxan + ATG in this respect. Of course, Lemtrada has its own side effects.
@@DrBrandonBeaber Thank you for the reply sir! Looking forward to more such videos. Thank you!
If we would treat people early and agressive with for example IRT's, the majority probably won't even have to get HSCT and there disability won't get that high. So until we get are DMT protocol SH*T together a lot of people might be better off empty there savings to get HSCT. I have non active ppms for which the evidence of HSCT is lacking IMO, otherwise I would go for it.
What are IRT's?
This is addressed in the videi. Watch again, specifically look at the graphs.
@@denosinha4289 Immune reconstitution therapy (IRT) in multiple sclerosis
انا مصاب ب ms
HSCT is performed for Lupus also?
Sadly no encouraging results. Have been searching for HSCT for around a year for Behçet's and no luck so far.
@@alyassery11 i may have of some successes with Lupus , what is ur source please? thanks.
@@ernietollar407 I wish you have all success. My sources are published research articles and that I approached 2 HSCT centres in Russia and Mexico. They did it for some patients. I managed to find 2 of them. They had some advantages but not what one may expect.
@@proudman6651 what did they say about hsct for lupus in Mexico and Russia?
have you talked to anyone who knows about or experienced it?
. I have PPMS but do actually know someone - a family friend in her 50's -with Lupus - i think Systemic Lupus Erythematosus (SLE).
@@ernietollar407 as far as I know they do it for Lupus in Mexico. Not sure if they still do it in Russia for it. Russian center gave me the ok for Behçet's disease then they said they stopped doing it. Try your luck if you want to but don't forget it isn't a cure .
Terry Wahls had HSCT
She did not
@@lush462 I read her book, and she actually received novantrone (mitoxantrone) in the 2000s. Here is a summary of the Wahls Protocol which includes her MS history: th-cam.com/video/cmLdfkq4BpY/w-d-xo.html
@@DrBrandonBeaber thanks! Her book is incredible written but it is still an n=1 story. I wonder if HSCT could work for sjogren related small fiber neuropathy? In Russia and Mexico they apply HSCT also for CIDP etc.
Thank you Dr Beaber, really appreciate yo talking this through 😊
:) I'm glad it was helpful
I had HSCT in 2017 at Clinica Ruiz in Mexico along with 13 other people of various ages and different stages of MS. Excellent facility and program. I was 57 with SPMS/PPMS and EDSS of 4. It didn’t work for me. My EDSS is now 6, but it did work for a few others in my group. Mostly those who were younger. I tried to get into the US and Italian programs but I was denied because of my age and very limited availability. I heard that the Italian program was the most intense because they bring your white blood cell count to practically zero,
sorry you didn't have great results. Do you know which conditioning regimen you received? I believe at Clinica Ruiz they do cytoxan + ATG, but I believe they also use rituximab.
@@DrBrandonBeaber I don’t remember offhand which chemo drug they used but rituximab was part of the process. I’m still on Rituxan every 6 months.
@@DrBrandonBeaber is Russia protocol better then Mexico protocol?
@@lisaelliott5135 I honestly don't know either of their protocols, and they may not use the same conditioning regimen every time.
@@DrBrandonBeaber yes I was just treated there and that was the protocol.
My wife had an extremely high disease burden with very aggressive disease. We went to Russia for an auto transplant. Conditioning regimen was cyclophosphamide 50mg/m2 x 4 days plus 500mg/ms rituxan. She is now 7 years post transplant and NEDA. Best thing we ever did. As an Oncology Certified Nurse I am confident it saved her life. Highly recommend it.
Thanks for sharing
Hey doctor B I have a video suggestion or question? Do you have any views on B12 injections aiding remyelination or reducing the destruction to the myelin sheath? Thanks
I personally have patients do periodic testing for B12, but I don't necessarily think b12 injections are helpful unless B12 is actually low. Also, sublingual B12 works well too, so most people don't need injections.